Tuesday, September 11, 2012

We went to the zoo Monday. It was gorgeous. This is Eli's
very favorite place - the snake house.
It was a Monday at St. Jude yesterday morning. And if somehow I let that memo slip by me after only four hours of sleep that night in order to be at the hospital for Eli’s early labwork, half a dozen or so random screaming kids scattered throughout the campus yesterday morning made sure I knew it. I don’t know what it was, but it seemed like everywhere we went had a designated screamer. The parents or grandparents, whoever is with the screamer always look so haggard and tired, even though this time it was not even mid-morning yet. I always tell myself that it is some kind of medication that the kid is on, then I say a little prayer of thanksgiving that I am not dragging Caleb around, who would be doing the same thing unmedicated, and that Eli is old enough to behave or at least reserve his fits protesting the inhumanity of being made to eat a pinch of peanutbutter and jelly sandwich for the Target House apartment. Even one such as me whose child teeters along the crest of the Valley needn’t look far to be thankful. Eli had back to back speech therapy and physical therapy yesterday, so I had a good hour to distract myself. My sub Melissa had shipped me the charger for the kindle that we haven’t had since I guess May or June. So, with it finally supped up I downloaded a biography about James Madison. I started it, time will tell if I finish it, but at least it is there to hauntingly pressure me to do something constructive. So, I sat trying to read this in the absolute smallest waiting room of the hospital that can at times be standing room only. Beside me was a woman in scrubs, but she was not an employee of St. Jude. Beside her sat a black man, and in front of him sat a young black teenage girl in a wheelchair. I am sadly unable to recognize childhood diseases, but she was muscularly and mentally challenged. When they sat down the woman was telling him about the wheelchair, something about how it has a tray that she likes to use for the girl usually but it was not on right now. The girl had her gaze fixed on the woman mostly, but would slowly shift to the man then back. He asked about a tracheotomy type device she was wearing, whether she slept with it or not, then he asked something about what she would do next. The woman, who I determined was some kind of regular homehealth nurse or caregiver for the girl, said “Oh, she will just watch her movies. She loves those movies. She’ll just get on the couch and watch her movies for the rest of the evening.” He nodded with a smile, and said “oh, ok, yeah, ok, I see.” He looked down at her hand resting in her lap and reached his hand out to scoop it underneath hers. With brightly painted fingernails, her hand rested motionless in his own. He didn’t hold it; he just let it sit in his open hand and watched it as if it was going to do something. Then the nurse said encouragingly, “Show Daddy how you can pick your arm up. Go ahead, pick it up, you can do it. Let’s show him what you’ve been doing in therapy.” The girl only shifted her gaze to the man, but didn’t move otherwise. “You can do it, you know how, from here (touching her near the shoulder) your whole arm, go ahead,” she said. Then the girl leaned away from them a bit and picked her arm up about two inches with the momentum of her lean and let it fall back to her side. Quietly, he said, “What do you know, look at that. That’s my girl.” He scooped her hand back in his and watching it he said almost to himself, “That’s just fine, just fine.” Even knowing that Eli is likely not to live past 12, I feel remarkably blessed when I look around because there is such a concentrated population of the afflicted innocent here. Of course, as I said, he is walking the crest right now, so we are enjoying the view.
I am not the only one glad to have the Kindle back.
Eli hasn’t eaten very well and lost weight yesterday, but was stable today. They do not want to take him off the TPN because he has not shown any progress in nutritionally sustaining himself. But, they are implementing what I call the “fly birdie” theory which is they are sending us home to see how he does in hopes that when he gets away from the routine and protection of here, he will begin to eat again. So, yep, we are coming home. He will still have his TPN (feeding tube) until he begins to eat. Which, they have told us from the beginning that they don’t ever send anybody home with TPN. I wonder if they told us that so that we would not use it as a crutch ourselves. So, they are reneging a bit on that, and are going to ship it to us each week. We will go to the Huntsville affiliate each week to have labwork done. They want to check him again on Friday, so my plan is to pack up Friday after his appointments and leave Saturday morning. Eli’s counts are down, so we can’t have a party for him to see everybody yet, but I wanted to invite you to say hi and wave as he is coming in. We are going to open up the clubhouse and have some drinks and a snack there if anyone needs something before we get there or would like to hang around after we get home. The girls and I will walk up there to say hi to anyone who stays after I get him in and settled. I am hoping to arrive at noon on Saturday. Wear your Eli t-shirt or something royal blue. Please, don’t park in front of a mailbox, or in front of anyone’s driveway, or in anyone’s driveway. We won’t take too much of your time, I know Saturdays are busy and we will also be eager to just be together at home ourselves. I think Eli was relieved today not feeling the pressure of the TPN and he ate a  pinky finger-tip width of a slice across a Subway sandwich, a handful of chips, and two squeezes of a go-gurt. A feast! So, you know, now that we’ve made these plans to come home, he will eat and gain weight until Friday and they will want us to stay until Monday to pull his line. That would just top off the entire last 10 months. I’m not sure if I would laugh or cry or pound somebody. So, I saw Ryan today. It sounds like they are going to try two rounds of the chemo drug etoposide orally and see if there is any affect before continuing it. The drug seems to be a general use chemo that stays in his body for a while, and can really lay a punch to his immune system over longer periods of time, which puts him at high risk for infections, the simplest of which would be deadly for him. He will do this from home. He is having an MRI done tomorrow morning (Wednesday morning) to see if there is any change before they start it. This will likely just slow the tumor growth, he will remain under hospice care. I haven’t seen any updates on the other boys, so, again, I’m going with the “no news” theory and pray that they are chugging along just fine. (Weird, so, people actually do not write updates when there is nothing to update. I’m sure you all will be glad when I adopt that philosophy.) I have read some about Lucy and she just seems to be a walking miracle. She is doing just fabulous, especially when I think of the depth from which they have come. She is truly an example of God’s handiwork.
I hope this is easy to see, but Eli has had one eyelash on each
eye for forever.
So, in addition to writing my posts into the wee hours, as I have said, I spend some time reading through posts, blogs, and articles trying to learn about medulloblastoma, treatments, trials, personal journeys so that we can be better prepared if/when we are faced with recurrence. It seems so long ago that I would spend good sleep hours well into the night reading about the best mountain-bike, golf clubs, tennis ball machine, or tennis racket. For Christmas last year, Vic and the kids gave me a wad of dough with a printed out picture of a mountain bike. I had been riding a $35 Black-Friday Early-Bird Special men’s bike from Wal-mart that I bought a few years ago. I bought two because they were cheap enough to basically be disposable. Well, I killed one of them during an 18-mile trip on a Rails to Trails trail, so I was getting the second one (which was technically Vic’s that he didn’t ride) ready to replace it. They gave me the money for my Christmas and birthday. I spent the next three nights reading and comparing bikes. On December 28, 2011 (Vic was off the entire week for the holidays) we all went to Madison to a bike shop for me to test ride a couple. The kids looked at bikes with me, they watched me ride, they walked to the Dollar Tree because they got bored, then came back. There was one I liked, but the brand was different than I had hoped for, however, the construction was what I wanted and the price was decent, so I told him I would be back after I had a chance to talk with Vic. It was Caleb’s nap time, so we went home, but I had plans to go back the next day to buy it. Mid-morning on December 29, 2011, I helped Eli put on his blue jacket and handed him a small trash can with a Wal-Mart bag lining in it, a water bottle and a pack of goldfish crackers for a snack while he waited to have an emergency sedated MRI at Huntsville Hospital. He told me not to let Caleb bother his Hot Wheels city because he wasn’t through with it. I emptily agreed, then he and Vic walked out the back door and didn’t come home.

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